Raynaud’s episode

[laurawm]

Last night in the process of coming out of a bad herx and going out in the cold I had a first ever episode of Raynaud’s in half of one of my fingers. It has frightened me and I wonder if anyone has any feedback on this or suggestions for best supplement/med to address this. I’ve done a search in the forum history and read that sticky blood and Lyme/SD are highly associated with Raynaud’s – I just don’t know why this happened in the middle of my treatment at this point – I was possibly slightly dehydrated as I had not been eating much yesterday due to nausea etc. (I might have been sick with a virus, not just herxing).

Thanks,
Laura

[Maz]

Hi Laura,

We just spoke via PM on this, but thought to post some ideas here in case it may help someone else.

Things I found useful for Raynaud’s symptoms when I had similar issues in my first year or so:

Fir Sauna
Systemic enzymes (which help to thin blood, so caution needs to be exercised if other blood thinners are being used).
Krill oil
Detoxing and chelation
Paraffin wax hand/foot bath

Folks with really severe Raynaud’s, like those with SD, or with primary Raynaud’s, may need to go on pharmaceuticals, such as Viagara, which was a drug originally designed for circulatory disorders.

There may be other methods others have found that help, so hopefully they will chime in also.

[Nico]

I have had Raynauds for 6 years, I finally started having Botox injections in my hands, it does work, believe me it has been almost 2 years since my last injections, and I felt it coming on again, so back to the hand Dr. before my fingers abscess. When I first got them it only lasted 6 months, next time 1 year, then this last has lasted for 2 years. My insurance wont pay, so I just spend the money, its so painful when your fingers abscess, its worth every penny spent. But if your not having full blown episodes of fingers abscessing you might try viagra, I tried it for a while, it made me have heart palpitations.
Nico

[enzed]

Laura,
I was diagnosed with Raynauds and SD 3 years ago. My fingers were bad then and impossible to keep warm enough because of the cold weather, so I moved from New Zealand to Australia, to a much warmer climate. I have had Raynauds ulcers twice. My treatment has included spraying fingers with nitro-lingual – normally sprayed under the tongue for angina – but it works quickly to restore blood flow to white fingers. I have also used ‘Rectogesic’ ointment to restore blood flow to white fingers – it’s normally used on haemorrhoids – for the same purpose, to restore blood flow. Both have worked on my fingers.

It’s very important to keep body temperature up, especially the trunk. I wear thermal vests under my clothes to keep my back warm and that helps my fingers stay warm. It’s also important to keep the feet and head warm to prevent body heat loss. I have learnt my fingers respond badly to extremes of either hot or cold, so I protect my hands when removing food from fridge / freezer and wear warm woolen gloves – with cotton gloves underneath – most of the rest of the time. I carry gloves and a jacket for wearing into air conditioned places like shopping malls – and even when I go to the hospital, which is air conditioned in the summer. Too cold there for my fingers.

I also learnt not to massage white fingers, as it actually damages the blood vessels further. Just spray ‘nitro’ spray on them and cover with warm gloves, or smooth a haemorrhoid cream over the fingers instead of spraying on nitro. I found my fingers don’t like getting banged, or squeezing objects tightly, as that’s how my ulcers started. So I gave up gardening and am careful in the way I use my hands – gently – and that has helped a lot. My most recent ulcer has healed up with minocycline when other antibiotics failed to work.

All these precautions are a pain I know, but better than losing fingers to amputation. It just takes a bit of mental adjustment and lots of gloves. I buy several pairs all the same color as I frequently lose one when I am out shopping and need to take one off to handle money!

[richie]

Hi–When I was real sick I had bad Raynauds -my internist gave me a calcium channel blocker called Adalat xr -within one week I was substantially better —
richie

[laurawm]

Thank you all so much for each of your replies and suggestions – I will give the OTC ones a try and talk with my doctor about the scripts. I haven’t had another episode since, but I must say I am afraid now going out into the cold. Today I hadn’t been out yet and I thought it was about 30 degrees F out like yesterday so I layered up in about four layers, gloves, scarf, and hat and trepidly ventured out only to find that it was 56 F. 🙂

Warm regards and thanks again,
Laura

[gbaker]

Hello Laura – I too suffer from Reynauds but thankfully have not yet had any ulcers. I was given some blood pressure tabs by a physician (60mg tabs Nifedipine daily) they only made my feet swell real bad so I took myself off. I resisted taking anything for the white fingers after that experience and relied on my gloves. But last month after deathly white fingers that refused to go triggered by the cold air conditioning I work in I made the decision to try BP tabs again, this time with a reduced dose and another brand of tab prescribed by the Rhumatologist. So now I am taking 2.5 mg Plendil daily. I believe it is helping – fingers still go white when cold but will disappear shortly after and they are not so bad when in air con. And, no major swelling in the feet! I love the hot weather we are having here in Brissy – almost 40 degrees today and no Reynauds yippee!

all the best
Gwen

[enzed]

I too have been prescribed Nifedipine and also Adalat in the past, but remain unsure if either of them actually helped my fingers. The rheumy took me off both several months ago – I think he thought they didn’t help. In my case the nitro spray is actually the most effective method to quickly reverse white fingers. That, and prevention by keeping them warm.

[Trudi]

@richie wrote:

my internist gave me a calcium channel blocker called Adalat xr -within one week I was substantially better

Hi Laura–
Magnesium is a natural calcium channel blocker. It may be of help to you–
http://www.livestrong.com/article/545281-magnesium-raynauds-syndrome/
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[laurawm]

Thank you Gwenn, enzed, and Trudi – I do take magnesium supplements, however, I had not taken much of any of my medicine on Sunday do to a lack of eating and just feeling so darn lousy. What I am unclear about is, from an infectious autoimmune standpoint, what instigates Raynauds? I have had wacky blood pressure ever since this all started and have had low body temp and felt generally cold for years, but what makes the blood vessels constrict to that degree (other than cold)? My CRP is very high…

Laura

[Trudi]

@laurawm wrote:

I have had wacky blood pressure ever since this all started

Me, too!

My CRP is very high..

My CRP was 134 when I first saw my LLMD. He took me off antibiotics because of the inflammation–fearing it would go higher. The last time it was checked, 5/2009, it was at 10.

Something that may have helped my Raynaulds is starting on borax–
https://www.roadback.org/forum/viewtopic.php?f=1&t=6029&p=54209
Stopped taking it in summer. Will probably resume it if I feel my “Lyme” symptoms coming back.

Good luck,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[cavalier]

Channel blockers didn’t help mine, but Niacin 750 mg’s twice a day for 2 wks & then one once a day helped along with gingko Biloba & enzymes along with upping my dose of AP. The other thing I did was buy over the counter Extenze LOL not for the reasons it is sold for but the herbs I looked up everyone of them online & they def. work on circulation so I was doing both Niacin & Extenze & that did the trick for me. I still take the Extenze but only 2 to 3 times a week as it helps my circulation so I do it proactively now & if I get into trouble again would go back to daily, which is why it works so well for the men as it gets the circulation moving.

Keeping the trunk warm & feet is important, keep up the FIR as well & avoid drafts.

My Cardio would not give me Viagra nor my Rheumy or my GP, saying if I was a man I could get this, which made no sense to me – so my feet can be at risk for gangrene but if I was having impotency issues I would get this, despite how bad my feet were they were black blue and my hands would turn colors as well. So i felt OK get creative – I came up with the OTC of Extenze & coupled with the Niacin which also one doc likes for reducing Lyme Niacin – which it makes sense raise the body temp & both of these do that job very well. 😀 It really helped me immensely & for that I have these 2 to thank for keeping my vascular more open.

Sometimes you have to play with it til you find what works. What works for one may not for someone else.

Best – Jill SD, Lyme & CPn

[laurawm]

Jill – you have me cracking up – I can’t wait to go get my Extenze! This is great – funny, as my young son is so attracted to the packaging on those products whenever we go into GNC and always dismantling that whole section begging to buy them as I hastily try to pick up after him all the while trying to be discrete and still manage to get all my needed herbs, so now I can tell him that we can actually get some. “But what is it for, Mommy?” “Mommy’s circulation, Dear, Mommy’s circulation.” I’m sure the cashier would be quite confused. 😀 I will try it.
Will also ask my doc about Niacin.

Thanks also Richie (will ask my doc about) Nico, and Trudi – Ugh – sorry your CRP was so crazy – I think mine was 18 a couple of months back. I was taking borax for awhile – I’ll read up on it again.

[cavalier]

I take also Gingko Bilboa but be sure you are not using a blood thinner if you take Gingko, this is also for circulation.

Yep Extenze I have a hard time not smiling when I have it go thru the grocery conveyor belt as I am sure they assume it is for hubby. Hubby tried it & it does indeed help circulation but it’s a general circulatory help as his cold hands his circulation was better there too. I figured if I could not get the Viagra I would look at the herbs in Extenze & they are really good ones for improving this no doubt.

It’s pretty funny (Extenze) but the combo of the herbs in it are proven for circulation.

I do take Boron 3 mg’s not the borax powder form but it’s the same mineral, but mine is made for human ingestion, I get it from Swansons I only take it about 3 times a week but it’s good for the bones that much I am sure of I cant say for circulation I dont notice it like I do the Niacin or Extenze. Niacin is good for detoxing too just run it by a doc.

Best – Jill SD, Lyme & CPn

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